Finally Moving to the Next Step

The IRB approved my protocol. Now the protocol needs to be posted and printed and then Dr. Munshi will come over and consent me and then we can start.

The chemo is a 2-drug regimen. The first day I’ll get both (which is standard) and then apparently there’s some wiggle room for days 2 and 3.

The goal of this chemo is to move out all of my lymphocytes to make room for the re-engineered ones (CAR-T cells) which will proliferate.

They will watch my platelets (currently 12) and hematocrit (currently 23.4) and supplement with transfusions as needed.

I am about 90% sure we’ll start today, but it’s 10:30 and the clock is ticking…

I am so grateful for the love and support that continues to come my way. Thank you, thank you, thank you.

Inpatient

Sitting in the inpatient waiting area for my room to be cleaned. So close…

The FDA approved the expanded access request for me for the CAR-T cell therapy. The request still has to be approved by Dana Fatber’s IRB (Institutional Review Board) but that is being expedited. All of my orders need to rewritten and they are changing the dose of my chemotherapy because of the low platelets.

They anticipate starting the chemo tomorrow afternoon.

It’s been an interesting day because Alison and I had to check out of the hotel at 11 am. And COVID.

First we headed to the Blue Hills Trailside Museum (which is mostly like a small zoo), but it was closed.

From there we headed up the North Shore where we found delicious fish and chips and the Gloucester Fisherman’s Memorial.

Our last stop was Rockport, MA which is just lovely, hope to go back non-COVID (and feeling better).

All the while checking for email messages and finally calling the hospital and was told it would be ready around 5:00. Got up to the room around 6:30.

It was good to tool around in a car and see some sights (without exerting myself too much). This stay in the hospital could be anywhere from 10-14 days. No visitors allowed.

Is it time to change the name of this blog? I think it might be a jinx!

I am literally losing track of time. So rather than a detailed timeline I’m just going to explain where we’re at and why.

I am currently in a holding pattern in Boston waiting on an application for expanded access application from the FDA. On Friday the sponsor determined that my platelets did not meet the criteria for the clinical trial (required:50; mine:15). However, they did approve me for compassionate use pending the FDA/IRB approval.

The vast team at Dana Farber including my oncologist, Dr. Munshi, and Dr. Jacob Laubach, principal investigator on the trial have written a protocol for the use of the CAR-T cell therapies already engineered for me.

Timing: The application was sent late afternoon on Friday, now it’s the weekend, and Tuesday is MLK national holiday.

On Friday I received fluids, a unit of blood, and a unit of platelets. Today was an off day. Tomorrow I go for lab work and possibly more blood products. Sunday is also an off day.

Assuming I get approval from the FDA on Tuesday I will be admitted and get the lymphodepletion chemotherapy inpatient as there is concern that my low counts will go even lower.

I’ll update again as soon as I hear from the FDA.

Thanks for all the well wishes and checking in.

Lots of fasting

Lots of tests/procedures = lots of fasting.

Tuesday: drove to Boston while fasting since the morning. Had bone marrow biopsy with conscious sedation. Highly recommend the conscious sedation for this procedure.

Wednesday: fasted in the morning for a PET scan. In the waiting room for the PET scan received a call from the research nurse that neither the study nor my insurance would pay for the PET. A few hours later, they called and said insurance would pay for a full body MRI that afternoon. Later that afternoon they canceled the MRI and got the approval from the study for the PET.

Thursday (tomorrow): I have my line placed at 12:00 and the PET scan at 3:30. No food for me! I have to fast from 6 am to 6 pm.

The schedule has been changing minute by minute since I arrived. Hard to complain, they’re doing the best they can, and having several people calling to keep me updated.

All that said, the working title for this post was SNAFU – Situation Normal: All Fucked Up.

Tomorrow is a new (fasting) day!

Limping to the Goal Line

O.k., perhaps that is a little over dramatic. However, these last few weeks have not been great. Mostly manifesting itself in my blood counts being too high or too low, depending.

Calcium too high (headaches, and possible confusion), solution = zometa and fluids. Possible cause, myeloma attacking my bones causing calcium to leach into my blood stream.

Low hemoglobin, aka anemia. I am apparently sensitive to anemia, throughout Christmas and afterwards the slightest activity (moving things in the refrigerator, washing my face in the shower, etc.) caused me to be terribly out of breath, solution = blood transfusion. Causes are either from the treatment I’ve been getting (but am done now until right before I go inpatient at Dana Farber/Brigham and Women’s Hospital) or from the multiple myeloma.

Very low platelets.

Low ANC, again very low, causes me to be immunosuppressed. They have been giving me Neupogen shots and this week added an antibiotic to be on the safe side.

Bone pain, this is definitely the myeloma. I am most comfortable standing or sitting up very straight in a chair, which makes resting a bit difficult. I did finally ask for something for the pain and they prescribed oxycodone (5 mg, take one or two every 6 hours). I feel like they hardly work, therefore I haven only tried them a couple of times. For now I am sticking with Tylenol.

Some nausea (helped by anti-nausea meds), and some serious fatigue (short cat naps help). I actually took some hours off of work a week ago, I simply passed out on the couch in the morning and then again in the afternoon. This is the first time throughout this entire illness (starting in 2014) that I have needed some hours off of work.

I am also trying to plan and get my act together for being away from home for 4 weeks (at least). I booked the hotels (the pharmaceutical sponsor is paying – yay!). Started planning some food/eats with Alison and Lisa. Thinking about packing clothes and everything else I will need. Continuing the count down – as of this evening I have 6 more work days and 2 weekend days to be fully prepared.

I’ve also put together my calendar:

Now, that most of the planning is done, it’s just thinking about the unknown of what the medical procedure will be like.

Line In, Cell Collection, Line Out

If only things were so simple as the title of this post. But, dear reader, never fear – all is well.

I drove to Boston at 5:00 am on Monday morning, December 7th. I valet parked my car and left my suitcase with the front desk. And then I walked the mile to Dana Farber.

Then I walked the maze that is the Dana Fraber/Brigham & Women’s complex, all inside in overhead walkways. They schedule you to arrive at 9 am for a 10:30 procedure. Tending toward the prompt side, I had a long wait in the waiting room.

When I got down to the pre/post op area the nurse started running through her questions. She noted that I had told them I would Uber back to the hotel. She then asked me who would be staying with me? “No one.” “You are having conscious sedation, you need someone with you for 12 hours.” Of course, this would have been good to know when I had the lengthy pre-op discussion on Thursday night!! Oy. They landed on giving me less sedation. And they did, and I was fine.

The next day I arrived at the Kraft Family Dlood Donor Center where they do the apheresis. Yes, that Kraft, the whole place is strewn with Patriots memorabilia! I had a visit from one of the research nurses, she told me I might want to stay over night because some people get tired from the aphaeresis. Do these people not know that I am a planner and need all of this information up front?!?! Anyway, a mere five and a half hours later and the apheresis was complete. I loved my nurse who sat with me for most of those hours. I asked a lot of questions, he was very informative and had good advice. He also had a lot to say about the ways politics and medicine come to play. He kept pointing doing the street and referencing “Cambridge”.

Then I headed back to have the line removed, which was inconsequential, other than the slight discomfort of laying down flat on your back with your head below your heart for 30 minutes.

Next up was a special bonus visit, back up to the multiple myeloma clinic for an Xgeva shot because my calcium was elevated (12.9). And then the drive home, which did not include any traffic even though I left a little after 4 pm. I always like to point out whatever little upside there is to this pandemic – no outbound traffic on a Monday night in Boston!

Wednesday morning I started my bridging therapy at Smilow. And because my hemoglobin was low (7.9) I needed to get a blood transfusion.

I felt pretty terrible on Thursday and Friday, probably the worst I have felt since the stem cell transplant. Very out of breath and oh so tired. Saturday I went into Smilow as scheduled for a neupogen (zarzio) injection to make sure my white blood count doesn’t go too low. Now, get your score cards out: my hemoglobin was down to 7.7, and on the bright side my calcium was almost normal at 10.3. So, another blood transfusion. Four and a half hours there.

Calendar updates

Bridging therapy: December 9 (done), December 16 and 23 (all Smilow)
Arrive in Boston: for the next phase of the overall CAR-T Cel therapy: January 13

I will stay in Boston from that date until 21 days after I receive the cells back (Day 0)(approximately January 20). However, they have warned that these dates are NOT set in stone and even mentioned that Dr. Munshi might want me to stay in Boston until 28 days after Day 0.

The Clinical Trial That Almost Wasn’t

On Tuesday afternoon, exactly one week before my leukapheresis, I got a phone call from my regular APRN at Dana Farber, Tina Flaherty. She told me that my M-spike was 2.06 and to be accepted into the study it needed to be 2.1. (A higher M-spike = more cancer.)

She told me to get another protein electrophoresis done at Smilow. They were also going to try and talk the pharmaceutical company into accepting me since it was so close and all of my numbers qualified me.

As an interesting point about these numbers, Dana Farber gives the results to the 100th decimal place, so the same test at the same time would have had me at 2.1 since they only report to the tenth decimal place.

So I found myself hoping that my cancer had gotten worse in the last week. I also was much more anxious about not having the treatment than having it.

While I waited for the results from Smilow (Alfredo my APRN there was really great about keeping in touch with me and telling me what they knew, etc.), I got a pre-op call on Thursday for the placement of my temporary line (placed Monday morning, out on Tuesday morning). One of the last questions she asked was who was driving me home after the procedure on Monday? I said, “What? I need to be driven home???” Because it’s a short visit and I was assured I would feel good enough to drive home on Tuesday I am traveling up myself. So just another wrench in the works. My final decision is to still go by myself, if I have time I’ll walk the mile to Brigham and Women’s Hospital and then Uber back to the hotel. Tuesday I’ll drive and park at Dana Farber.

Friday late morning I got a call that they had a verbal on my M-spike and it was 2.4 – yay? 🙂

I will get treatment (“bridging therapy”) at Smilow December 9th and the 16th, the same regimen I was just on (Carfilzomib, Cytoxan, and Dexamethasone).

Hope to get some actual dates for the rest of the CAR-T cell therapy on Tuesday.

Cutting Edge

“Cutting edge”, it sounds so hip, so cool, so in the know. And on the cutting edge is where I now find myself.

My current treatment of Krypolis (carfilzomib), Cytoxan (cyclophosphamide), and dexamethasone has stalled, a small uptick, an inch downward, but staying right about where it has been. To the layperson (aka me) this doesn’t seem so bad, especially considering where the numbers were. But to an oncologist, this is a failure of the treatment and a need to move on to something else.

I met with Dr. Seropian on November 11th, a little more than a week before I was already scheduled to see Dr. Munshi at Dana Farber. Seropian mentioned some clinical trials at Smilow, I wrote them down to take to Munshi. I told him I knew that Dana Farber had put me on a list for a CAR-T cell therapy trials at Dana Farber.

And then that Friday night (November 13), at almost 6 p.m., I got a call from a Dana Farber (DF) research nurse. There was an opening in a CAR-T cell clinical trial for December 8th. They had reviewed all the candidates and I was the perfect one (apparently the right combination of enough cancer, and enough health). She gave me a quick rundown and I agreed to participate. I was hoping that this would be coming up soon, so I wasn’t that surprised. December 8th sounded sort of far away, but it really isn’t.

The DF research team managed to schedule all of my screening appointments for Monday, the 23rd:

  • Vein check (to see if I need a port/line for the leukapheresis
  • “Consenting” with Dr. Munshi
  • “Teaching” with the research nurse
  • Pulmonary function test
  • Transthoracic echocardiogram
  • Bloodwork
  • Electrocardiogram
  • And then back home that night.

    It sounds like I might get a 2 week chemotherapy break between now and December 8th.

    After December 8th things are a bit up in the air, this is what I know:

    • I will receive some sort of bridge therapy after the 8th and before I am admitted.
    • It takes 4-6 weeks for them to modify my blood cells.
    • About 2 weeks before they are ready to start the process of returning them to me I go back to DF for more tests including a bone marrow biopsy (boo!)
    • 5 days before they return the cells I will get 3 days in a row of lymphodepleting chemotherapy (fludarabine and cyclophosphamide), the first 2 days are 8 hour days, and the third is a 4 hour day). This is followed by one day off, the following day I am admitted, and the next day I get the cells, Day 0.
    • From Day 0 I will have a minimum hospital stay of 7 days, depending upon the severity of the side effects.
    • For 21 days from Day 0 I need to be within one hour of Dana Farber.
    • For 30 days from Day 0 I need to have a caregiver with me 24/7.

    When I ask the nurse how I will feel after this part or that part (I never ask about the week in the hospital, I should do that) she always says it’s not that bad, I can drive myself, etc.

    Speaking of driving myself, this pandemic and no visitors and quarantining, etc. is really throwing a wrench into my planning. No visitors at all at DF for outpatient visits. One visitor for inpatient. But with travel restrictions it is complicated.

    The possible risks/side effects of the treatment sound pretty horrific, but they have found that myeloma patients are faring better than the lymphoma patients (CAR-T is already approved for lymphoma). In the studies (there are multiple companies vying coproduce this therapy for myeloma), myeloma patients have not reached the highest degree/level (3) of side effects. That said they are: cytokine-release syndrome (CRS), neurological events and brain swelling, and tumor lysis syndrome (TLS). So fingers crossed!

    How many times can one say, “it’s always something?”

    Roger T. Conway, Jr. October 1968 – July 29, 2020

    So much has happened since early July, I was waiting to blog until I felt I could write about my brother’s passing. But, as it turns out, I just can’t. You can read Roger’s obituary.

    The Rest

    Kyle

    On July 26th my son, Kyle, had a serious leg injury from a “tubing” accident. A boat sped by them too fast and too close which caused a large wake as they were nearing the boat they were tubing from, flipping my (large) son, his girlfriend and her two younger siblings into the air. Only Kyle was injured, catching his calf on a cleat on the side of the boat. It was a deep, wide, ugly, nasty, gash. I will not post photos here (they are not for the faint of heart). They rushed him to a nearby hospital where they decided to sew him up – only for him to get an infection two days later, sending him to the hospital for emergency surgery, where they thought he might have flesh eating bacteria.

    It is very long story with a total of 3 surgeries, lengthy hospital stays, a skin graft, tremendous care from his girlfriend, Andreah, and many, many ups and downs. But 7 weeks later he was able to go back to work. He has no limp, it looks “pretty good” considering, and he hopes to get back to the gym soon.

    Not the 2nd Inning Anymore (the continuation of my relapse)

    I started the daratumumab/pomalyst/dexamethasone (although the first cycle on pomalyst, Smilow wasn’t sure about it because of my low blood counts – not “cancer counts” but CBC etc.) on June 18.

    On July 1, my “cancer numbers” had increased 24 fold (24 times what they had been) – boom! Followed by a 37% increase, etc., etc. One evening, a week after my brother died, leaving my son in the hospital after one of his surgeries, I received a call from my Smilow oncologist, Dr. Stuart Seropian. He said we needed to start thinking about other therapies. He had lots of suggestions that I listened to walking through the parking garage and driving home, but not really able to take any of them. He wanted to know what Dana Farber thought, I did too.

    For the first time, I had a hard time reaching anyone at Dana Farber, or getting a return call back. It felt like a long time, but as I look back at my online patient portal it was less than two weeks. I finally spoke to Tina (APRN) on August 10th while on vacation with my family in Maine. She said all of the symptoms I was experiencing (oh yeah, I wasn’t feeling really terrific, out of breath, headaches, tired, some low grade fevers) was because of the myeloma. She said she would confirm with Dr. Munshi but thought we would switch to Krypolis (carfilzomib), Cytoxan (cyclophosphamide), and dexamethasone, which is indeed what I started on August 17th. She also told me how sorry she was “that it came back”.

    The new regimen is given 3 weeks on and one week off, the Krypolis and Cytoxan are given by infusion. The dexamethasone is a pill, and is every week. The Cytoxan is more like “real chemo” as opposed to the other regimens I have been on where there were basically no side effects. I am tired, a little nauseous (managed with a couple of anti-nausea meds), and my blood counts are taking a beating (ANC, so I am very immunocompromised and need Zarxio injections to get my neutrophils up; hemoglobin, so I am pretty anemic, headaches, tired, out of breath walking up the stairs, etc.; and platelets, so I bruise easily).

    After a little mix up I found out that Dana Farber only wants me to get the Cytoxan on week 1 and 2, which is what we are doing now, and I think it will give me two good weeks out of 4 which sounds really good at this point. And even better news is that my meloma numbers are dropping:

    DateKappa Free Light ChainsPercentage change from start of treatment
    Aug 17251.47
    Aug 2983.96– 67%
    Sept 929.89– 88%
    Sept 2328.03– 89%
    Sept 2920.91– 92%
    As a reference, the kappa free light chains should be around 1-2.

    Fevers

    The evening after my 3rd dose of Krypolis and Cytoxan I went to bed with chills. When you are getting chemotherapy that can lower your blood counts you are told to call if you get a temperature of 104° or greater. Around 9:00 pm I called as my fever rose above the limit and they wanted me to come in. Smilow has an Oncology Extended Care Clinic (ECC) so oncology patients don’t have to go to the Emergency Department and fortunately it was still open and had a bed for me.

    When you go to the hospital with a neutropenic fever (I have my own personal experience with these and the experience of my first husband, Ken’s, as well). They culture and test you for every possible type of infection. And during the pandemic, a COVID-19 test is also part of that. And typically they don’t find anything but treat you with broad spectrum antibiotics anyway. This was the case for me, I was admitted and treated with several IV antibiotics. They also managed some of my treatment side effects. I was in the hospital for 3 days, and eventually they did find a little bit of pneumonia in the lower right lung. I had no symptoms of pneumonia and finally got home (after working in the hospital for a couple of days).

    The next time I had treatment (2 weeks later as there was a week off in between) I again got a fever. I did not call Smilow. I was a bad girl. I just really, really didn’t want to be admitted to the hospital again. I monitored the fever, it went as high as 102.8°. But then it did come down and I was fever-free by morning. I “told on” myself at my next appointment and was advised that I really needed to call, which I agreed I would. That night (after treatment that day), again, I got chills, and again the fever went over 100.4°. I called right away. My APRN, Alfredo called me back. I told him I really didn’t want to be admitted, but I would come in for all the cultures, swabs, etc. He checked the ECC and they were full with no beds. He agreed that I could stay home and call him in the morning, and not take any Tylenol the following day so we could make sure the fever was gone. And it was. I continue to get a fever the night of the day of treatment, apparently it is just part of my body’s response to the Krypolis.

    The Future

    I’ll continue with this treatment. I’ll remain immunocompromised in the middle of a global pandemic. I closely watch our local state COVID-19 numbers, and the trend is not great. It is going to be a long winter. If I am playing the “pollyanna glad game”, quarantine during the pandemic does allow me to rest without pushing myself to engage in fun, active social activities, it’s the perfect excuse to lay on the couch after a long day of work.

    I don’t actually know what the “plan” is. I go to Dana Farber in person for the first time in a long time on November 19th. Dr. Munshi (who is the myeloma leader for the CAR-T Cell Therapy program at Dana Farber) has put me on the list for their CAR-T cell therapy, it is still a trial but he expects approval around the end of the year. If I relapse again, that seems to be the next step, possibly with DCEP therapy (had DCEP pre stem cell treatment) prior to the CAR-T cell therapy, because my myeloma is a tough mother-fucker. But you know what, so am I.

    The Worst News

    Back in December of 2018, I shared my brothers soft tissue sarcoma diagnosis and his impending surgery. I have not shared anything else about him since then. Subconsciously I may have been waiting to share some good news. And for my brother, over the last 18 months, there really hasn’t been any good news.

    Roger and Hope, Southampton, NY

    His surgery in January 2019 was successful, they saved his leg, he did physical therapy, he was recovering. And then he had his first post-operative scan in April. And it was the worst news. Correction, it felt like the worst news at the time. His cancer had metastasized to his lungs. He had been told early in his diagnosis that if this were to happen it would certainly be fatal. So, this was terrible news. He had not yet fully recovered from the very complex surgery on his leg and now he was facing more. No time to relish a few good months. Back at the fight, the struggle, the doctors, the chemotherapy, the tests, the drives to New York, and yes, another surgery, actually two.

    One successful lung surgery, more healing, no chemo while healing, more scans. Second surgery scheduled, feeling a little hopeful, until the post-op call – there were too many tumors to be able to successfully operate. Hearing this, it’s the worst news ever. How can it keep being the worst news ever?

    More chemo. He adjusts his goals, but does hold on to some hope. Some immunotherapy treatment. But more unexpected visits to the hospital. Strange occurrences, things that should not happen (“We’ve never seen that before.”), and not in a good way.

    And then what surely must be the worst news ever, the worst. There are no more treatments. There are only an unknown number of weeks to live. There is a range, but it is not a very wide range. Not nearly wide enough, not even for his shrinking goals and hopes.

    But, my brother is not his cancer. My brother is a giant of a man, in stature and in heart – loved by multitudes, adored by many.

    He loves to make people laugh, dare I say he lives to make people laugh. He is not a jokester – he is witty and funny. But mostly, he is kind.

    His sisters can be cranky, outraged and at our worst maybe, even spiteful (not that we would ever act upon it, but oh, we will talk about it). And my brother, he listens. And he always, ALWAYS, gives the positive spin, sees the bright side, the kinder, gentler way. We will not be the same without him.

    I can’t bear the thought of him not being here. I already feel lost. Everything feels useless, unimportant.

    And I know, all too well, the worst news is yet to come.


    One of Roger’s oldest friends, Joe Garbus, has organized a Go Fund Me to support Roger’s young family.

    Avery’s 5th birthday party – Grace, Roger, Avery , and Hope